Navigation Links
Canadian researchers discover how to measure quality of life for rare blood condition
Date:11/4/2013

OTTAWA, Canada November 4, 2013 A CHEO-led multi-site North American study, headed by Dr. Robert Klaassen, lead investigator at CHEO and associate professor in the University of Ottawa's Department of Pediatrics, has confirmed the validity and reliability of a quality of life measurement tool for children and adults with thalassemia major. The tool was created between 2006 and 2009 through the combined efforts of CHEO, the Hospital for SickKids and Laurentian University.

Symptoms of thalassemia major, a rare genetic condition, include severe anemia in the first year of life, chronic fatigue and failure to thrive. The only cure is bone marrow transplantation. Unfortunately, this option is available only to a minority of patients.

Patients with this blood condition receive multiple red cell transfusions in any given year, which inevitably leads to iron overload, as the body has no natural way to get rid of iron. However, pharmaceutical companies are creating therapies to treat this condition. While in the past, medication was commonly administered by a needle in the arm for 10 hours every night, advances in medicine have introduced oral agents. All treatments are expensive and have side effects.

What interested the research team, whose findings were published today in the British Journal of Hematology, was the overall quality of life for these patients over the long term. "Quality of life is moving from a research tool, where studies are done to show that one drug is better than another drug, and it's evolving into something that practitioners will use to optimize individual patient care," said Klaassen. "The future of health care will incorporate quality of life surveys into electronic patient records, so physicians and allied health care professionals can build a care plan around a patient's physical symptoms, emotional state, support networks, environmental restrictions and so on."

The disease-specific quality of life measurement tool is called TranQol (transfusion quality of life). It includes four sub-domains for a pediatric population, including physical domain, emotional domain, social domain and school/career domain. The research team took three years to build the tool, and conducted almost four years of reliability and validation testing across North America. It performed over 100 interviews with health care professionals with expertise in thalassemia, patients, adults, children and parents. The validation and reliability results are based on self-reporting by patients.

"There is a trend happening now: pharmaceutical companies are chasing rare disorders because there is less competition and a faster, higher potential impact," says Klaassen. "For the first time in 40 years, the hematology field is exploding and our evidence-based measurement tool is going to be key to understand what, how and why different therapies work, or don't."

To perform the validation and reliability testing, the CHEO research team collaborated with hospitals from Boston, Philadelphia, Vancouver, Sudbury, Toronto and Oakland. Funding was provided by Novartis Canada.


'/>"/>

Contact: Adrienne Vienneau
avienneau@cheo.on.ca
613-737-7600 x4144
Children's Hospital of Eastern Ontario Research Institute
Source:Eurekalert

Related medicine news :

1. Lime Light Partners With Stalco Inc As Its Authorized Canadian Logistics and Regulatory Partner
2. China Mould Company DuratecPlastics.com Released Its New Moulded Plastic Products To Expand The Canadian Market
3. DIA to Host Annual Canadian Meeting: New Realities/New Frontiers
4. More Salt for Canadians: The Salt Institute Applauds Decision to Raise Sodium Recommendations
5. Canadian Healthy Vending Announces the Placement of a Max! Healthy Vending Machine at the IUCPQ, Quebec City, QC
6. Olympus, Ethicon, Stryker and Karl Storz Lead the Growing Canadian Endoscopic and Surgical Device Market Valued at Nearly $500 Million, Reports iData Research
7. Canadian Web Hosting Successfully Completes Annual SSAE 16 Type II and CSAE Type II Audits
8. Canadian group gives guideline recommendations for lung cancer screening
9. Canadian Web Hosting Announces Major Upgrades for Their Shared Hosting Servers and Discounts Shared Hosting Plans
10. Canadian Healthy Vending Applauds the Decision to Ban Unhealthy Snacks from the Canada Summer Games Athletes Village
11. Canadian Man Over 450 Lbs is Successfully Treated With Duodenal Switch Surgery in Mexico by Dr. Jose A. Castaneda
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:12/2/2016)... ... , ... The annual time frame to change Medicare health and prescription drug ... 7th. Currently-enrolled Medicare beneficiaries who are looking to switch from their current plan to ... make changes during this period order for their new policy to go into effect ...
(Date:12/2/2016)... ... December 02, 2016 , ... More than half of American teens ... of parents report speaking with their child about sex related topics, less than 60 ... Mediaplanet is proud to announce the launch of its second edition of the “Sexual ...
(Date:12/2/2016)... , ... December 02, 2016 , ... Sourced from the ... some unique properties including its unmatched natural purity of just 6 ppm TDS (Total ... crisp. , Nothing Water has been available in several ShopRite and FoodTown stores in ...
(Date:12/2/2016)... , ... December 02, 2016 , ... ... meals to needy individuals and families from eight different sites throughout Miami-Dade and ... Day. Over 1,000 volunteers worked very hard on Thanksgiving morning by putting together ...
(Date:11/30/2016)... Northridge, CA (PRWEB) , ... November 30, 2016 ... ... Elyson, announce that they now offer a comprehensive in-house dental plan for all ... dentists have developed a plan that gives patients a number of perks, including ...
Breaking Medicine News(10 mins):
(Date:12/2/2016)... 2016  PipelineRx, a leading medication management technology ... demonstrations of its SaaS-based telepharmacy platform, PowerGridRx™ ... 2016 Midyear Clinical Meeting and Exhibition, December 5-7 ... nearly 300 hospital clients nationally, the Company is ... to dramatically improve pharmacy operations, enhance patient safety, ...
(Date:12/2/2016)... 2, 2016  Maxor National Pharmacy Services, LLC ("Maxor"), today ... Inc. ("PSI").  The combination of Texas -based ... -based PSI bring together both company,s clinical expertise and high-touch ... an industry-leading specialty pharmacy. About Maxor ... , , ...
(Date:12/2/2016)... 2016 Lianluo Smart Limited (Nasdaq: ... which develops, markets and sells medical devices and ... and international markets, recently attended the ... New Progress Forum, co-hosted by the Institute of ... , Guangdong Provincial People,s Hospital and Cardiology Department ...
Breaking Medicine Technology: